No Longer Gluten-free

When The Mayor had a birthday back in June, I allowed him and the Princess to go off of their gluten free diets.  We to this occasionally to see what happens.  Since we don't have a diagnosis of genetic celiac disease, the hope has always been that they would grow out of it.  I was allergic to wheat as a kid, but I started being able to tolerate it about the time I started kindergarten.  So, we had reason to hope that things would go the same way for him, and then, both of them. 


But the age of 5 came and went with no change in The Mayor.  Last spring when we tried it, he said that he felt fine, but I could tell that he was bloated, his eyes looked puffy, and, well, his bathroom habits changed.  If this seems like too much information, I'm sorry, but I am writing it to help others who might be struggling with the same thing.  It started to look like he was not going to be OK, so back on the diet they went.  it was even more obvious with The Princess, who wasn't using the bathroom alone yet.

Back to this year.  A few weeks after they went on a regular  (but vegetarian), diet, The Princess was obviously uncomfortable again so we took away her gluten.  I reported all this to the NP we see for their physicals and told her that I was ready to pursue testing with an endoscopy of necessary to find out for sure that they were, or were not, going to be gluten free forever.  As it turns out, you have to see a pediatric GI specialist to get an endoscopy, and they don't have those at our local hospitals, so I took them to Dr. Betzhold.  The office was kind enough to get them back to back starter appointments.

They ran bloodwork on The Mayor that day, because he had been eating a normal diet.  The plan was that if it showed any immune response to that diet, the decision might be made to do the endoscopy.  If he had a very strong reaction, an endoscopy wouldn't be necessary, and if he had no reaction, he would be cleared.  No endoscopy, no celiac, no diet.  to be specific, this bloodwork was for immunology, not genetic evidence.  he had genetic workup done when he was about 4 years old, but it showed he carried one gene and not the other, which is inconclusive.  That was why I thought we needed an endoscopy for a definitive diagnosis. 
We don't need one though, because they called a week after the initial appointment to say that his labs showed no response to the gluten.  He feels fine, so he is fine!  We can chalk up his earlier problems to am immature digestive tract.  They want to do labs again in six months to confirm.

The Princess couldn't be tested that day because she had been on a gluten-free diet.   Dr. Betzhold advised her to eat a (gluten) cookie a day for six weeks, and then come back for a blood test, rather than eat a full regular diet and feel very sick.  She has been very careful to make sure she gets her cookie every day!  Unfortunately, I can tell she's been eating cookies because she clearly doesn't feel well.  I don't know if her current spate of the crankies is related to it, but the um...other evidence, is present.  She'll get her bloodwork in late September.

I'm glad to have one less child on a special diet.  There are a great many gluten-free products on the market, and they taste pretty good, a huge improvement over the late 1970's options according to my mother.   I remember crumbly rice flour cakes laced with coconut to moisten them.  I'm still not a fan of coconut...  But these miracle foods are expensive, and most vegetarian meat substitutes contain gluten, which limits the options.  And boy can that boy put it away!  So, I'm happy for him and for me!  For a long time we had this issue on our prayer cards, so I want to thank everyone who was faithful in praying for The Mayor's tummy to heal!  Please, keep it up for the Princess!